Apart from the other issues raised in this thread so far, I picked up on two very important facts about ataxia. Facts that seem to be true in many cases!
The first fact is quite simply that there is a lot of perceived or, indeed, apparent ignorance in the medical community regarding ataxia. We need only read this thread to see that is so - I ask readers here to look at other threads on this site and around the web to see further proof though. To be fair, the people that have been involved with finding out what is wrong with me have been very good and tried their best to be helpful. However, out of the three physios, many nurses, at least four GPs and other medical professionals I have talked to about my ataxia non new what ataxia was until they came in contact with my case. Thankfully the two neurologists I have seen do have some idea about ataxia - even they say there is nothing they can do but observe me (once a year I go to visit a neurologist) though.
I found out that I was seen as having ataxia by accident - a GP had written it on a medical certificate I had to pass on to benefits authorities. When I asked the GP what ataxia is he said something on the lines of 'We do not know!'. Talking more with the GP established that he actually meant two things by the comment - that the surgery team had no knowledge of ataxia and that, in some cases, 'ataxia' is used as the description when there is an obvious health problem with the patient but there is no 'solid' diagnosis or evident cause. The GP said that mine is a very interesting case and the whole medical team would be interested in following it to learn more about ataxia. So there is at least that! I too have found out most of what I know about ataxia from forums and the net in general but would be happier if doctors knew more than me about it!
The second fact is the 'fraud' issue. More correctly, the issue is of patients with ataxia - especially 'undiagnosed' (no - really) or not genetically proven ataxia can feel that they are guilty of some kind of fraud. I have experienced this feeling of being a fraudster when I am clearly not and have read around the net of others with ataxia having similar feelings.
To look at me, some seem to think that there is nothing wrong with me as, before I try to get up or walk about, I have no outward signs of disability (some people cannot even see a walking stick held in plain sight). I have been asked to give up a disability seat a few times and had to show my 'registered disabled' card to prove myself disabled! (Even then the card was questioned!)
I often feel that I want to go out on a long walk, ride a bike, go back to my work in a warehouse (heavy lifting) and do other things that I used to do without problems. Sadly, I cannot. Sometimes, I feel 'fit as a fiddle'. Sadly , I am not. Sometimes, I feel like a fraud when I feel that I want to do those things but know my abilities have changed pr when others do not see my problems and assume there is nothing wrong with me or go so far as to make the accusation to me. Gladly, I know I am not a fraud.
Back to the 'odd'* question; 'I am wondering if any of you have received care or advice from doctors that help you in dealing with Ataxia'. I have had lots of advice ranging from 'try to keep active' to general well being advice to 'change your diet a little' to pain management (I get a lot of shoulder, lower back and general muscular pain) to advice about sleeping well. The thing is, this advice is always short or 'in passing' and not longer or more focused or session based! I was going to physiotherapy for about a year or so but stopped when the physiotherapist said that apart from the movement and exercise advice given, there was really nothing more that he could do for me - I was told I could make further appointments with him as and when needed if things got really bad though.
Anyway, it's been a good hour since I started this wall of text and I have a lot of pain across my shoulders! So, I will take a rest before checking out some more threads in this forum.
Best wishes, stay safe!
*There are no bad questions except those not asked - sorry I cannot remember where that quote is from.